The 7 Best Parkinson's Disease Support Groups of 2020

Find a community to help you cope

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First Look

Parkinson’s disease (PD) is caused by the loss of dopamine-producing nerve cells in the brain. As a result of dopamine (a chemical messenger) depletion, various symptoms occur, such as tremors, stiffness, depression, sleeping issues, and more.

These symptoms of Parkinson's disease are often unpredictable and difficult to control. They worsen over time and eventually interfere with a person’s daily functioning.

Support groups—which can be small or large, and meet virtually or in-person—can help a person find strategies to cope with and adapt to the day-to-day struggles and demands of living with PD.

Support groups may also reduce stress, serve as a source of encouragement, and improve quality of life. Joining one is also often a good way to learn about emerging PD research or therapies.

Here, we have chosen some of the best Parkinson’s disease support groups. The information provided is hopefully a good stepping stone for finding comfort and guidance.

Our Top Picks

Best Overall: American Parkinson Disease Association

American Parkinson Disease Association

American Parkinson Disease Association

Founded in 1961, the American Parkinson Disease Association (APDA) is reportedly the largest grassroots network devoted to fighting Parkinson’s disease. They have invested more than $185 million in raising awareness, supporting educational programs, and funding research, with the goal of putting an end to PD.

The professionalism, ease of use, and the number of support group services that the ADPA provides are what make this organization the best overall support group for Parkinson’s Disease.

In 2017, the ADPA collaborated with a support site, called Smart Patients, to form a new online support forum. Within this free discussion forum, patients with PD, loved ones, and caregivers can socialize, learn more about PD, and share tips and coping strategies about living with the disease.

As an added bonus, registration is simple: All people need to provide is an email address. The website overall is clean, well-organized, and conversations are easy to sift through or start on your own.

Besides its friendly and warm online support community, the ADPA has over 1,400 free support groups nationwide. Each one is unique—some are devoted to people diagnosed with PD at a young age while others focus on caregivers or family members of people with PD.

The ADPA also offers exercise classes, such as Tai Chi, non-contact boxing, yoga, and dance, as well as educational seminars and social meet and greet events.

Best for Starting Out: DailyStrength Parkinson’s Disease Support Group

DailyStrength

DailyStrength

DailyStrength is a division of Sharecare, which was created by WebMD founder Jeff Arnold and the famous Dr. Oz in 2009. The DailyStrength Parkinson’s Disease Support Group is a free and welcoming online support community with more than 400 members and 3,000 posts.

The mission of the group is centered around empowering and inspiring each other to overcome PD-related and life challenges.

Overall, the DailyStrength website is inviting and easy to navigate, and registration is straightforward and quick. Posts are informational, practical, and thoughtful. This is, perhaps, a good place to start for people looking for a smaller, more intimate online support group that is not overwhelming or associated with a national organization.

Even though the site is not moderated, to keep the support group safe and positive, DailyStrength has a set of guidelines that the members are asked to follow.

Best for Variety: Parkinson’s Foundation

Parkinson’s Foundation

Parkinson’s Foundation

The Parkinson’s Foundation was formed from the merging of two other foundations—the National Parkinson Foundation and the Parkinson’s Disease Foundation—with the mission being to improve the lives of and ultimately find a cure for people living with PD.

The Parkinson’s Foundation has a vast network of free, in-person support groups located throughout the country. Most of them are for anyone living with PD, but some are geared toward a certain audience (i.e. people with youth onset PD).

The Parkinson’s Foundation also offers a free online support community called PD conversations. Here, individuals can connect with others living with PD, as well as get their questions answered by PD experts. To focus their interactions, the online community is broken up into discussion groups—newly diagnosed, symptoms of PD, Spanish-speaking patients, and much more.

The Parkinson’s Foundation also offers health and wellness classes and free educational resources through its local networks. The organization also raises awareness and funds through various gatherings, such as its annual fundraising event called the Moving Day Walk.

Best for Information Sharing: PatientsLikeMe

PatientsLikeMe

PatientsLikeMe

PatientsLikeMe was founded in 2004 by the brothers of Stephen Heywood, who had amyotrophic lateral sclerosis (ALS) until his death in 2006. But in 2011, this free online support community opened itself up to other health conditions, including Parkinson's disease.

The Parkinson's disease support forum is now an active and robust community of close to 30,000 members, and what makes this forum so appealing is its role in information sharing. Members can voluntarily report aspects of their disease (e.g., symptoms, medications, lifestyle habits, diet), and this data is collected and shared in the form of basic, colorful charts. Members can also sift through the data using easy-to-use search and filter tools.

Besides sharing and learning from one another, individuals can socialize and foster connections or friendships. Profiles on the forum (only visible to members) contain information like gender, age, hometown, and a picture (which makes it more personal). Members can also include a short bio about themselves and a list of interests.

Any information shared in the forum is not protected by HIPAA, because it is voluntarily provided. Also, other members can send private messages—but just through the forum, and not by email.

Best for Support Group Leaders: Parkinson’s Movement Disorder and Alliance

Parkinson’s Movement Disorder and Alliance

Parkinson’s Movement Disorder and Alliance

The Parkinson’s Movement Disorder and Alliance (PMD Alliance) is a nonprofit organization that focuses on characteristics like empathy, creativity, resiliency, and shared learning.

It also has a wealth of support and educational services. Aside from an online support group that meets on Zoom and is led by a licensed social worker, this organization also offers various in-person support groups located throughout the country.

Additionally, the organization also offers numerous educational programs like "Lunch with Docs," in which individuals can meet with a movement disorder specialist virtually over lunch from the comfort of their own home.

However, what is truly unique about this organization is that it offers free workshops across the country called In Sync for supporting and teaching people interested in developing their skills as a support group leader.

There, people can learn skills and build confidence in designing and leading their own support group (including exercise-based support groups) for Parkinson’s disease or other movement disorders. Leadership experts and health care professionals also provide guidance through informational presentations.

Best Facebook Support Group: Parkinson’s Community

Parkinson’s Community

Parkinson’s Community

Parkinson’s Community operates the largest support group on Facebook with over 18,000 members and hundreds of posts each month.

Founded in 2016, this free, active, and insightful group is private, meaning it requires permission to join, and posts are only visible to members. It’s open to people living with PD and their family members.

While the company that runs this community (Research Catalyst) is focused on finding study participants for various research studies, individuals can simply join the Facebook group for support and encouragement.

Besides the online support group, Parkinson's community offers other resources as well. People can qualify to speak to a Parkinson's disease advocate about their personal journey with PD (i.e. symptoms, therapies. etc.). There, individuals can also see if they (or their loved ones) qualify for different PD-related clinical trials.

Best for Peer-to-Peer Support: NeuroTalk

NeuroTalk

NeuroTalk

NeuroTalk is a free and casual online support group for people with neurological disorders, including Parkinson’s disease.

After registering and creating a username and password on the website, individuals can enter the Parkinson’s disease forum. Many of the posts have more than hundreds of thousands of views.

The posts vary widely in content, from talking about symptoms and therapies to discussing the biology behind Parkinson’s disease. People also use the site to request or offer medical equipment, socially connect, tell jokes, or inspire one another through art or poetry.

Overall, the style of the site is simple and gives off a somewhat cozy vibe. It may be an ideal support group for people looking for a healthy distraction or listening ear. Members can express their moods through icons, which are somewhat outdated but add a fun, light element to the group.

How We Chose the Best Parkinson’s Disease Support Groups

In choosing the best Parkinson’s disease support groups, we considered various features like the ease of becoming a member, professionalism, website navigability, and the national profile of the group. We also considered the diversity of the support provided, like whether the groups provided a healthy mixture of emotional, informational, and social support.

For those looking for a more casual, peer-to-peer experience, we selected NeuroTalk and Parkinson's Community. However, Parkinson’s Foundation is a great option for people who want to defer to experts.

What Are Parkinson’s Disease Support Groups?

Parkinson’s disease support groups are people living with PD (or loved ones/caregivers of those with PD) who come together to share their common experiences. Through sharing, members of support groups can provide and receive comfort, encouragement, knowledge, advice, and inspiration.

Each support group is unique. Some groups meet in-person every month, whereas others have no meeting times and are centered around posts on an online forum. Support groups may also vary in their target audience, meeting format, size, and focus (educational versus social).

Is a Parkinson’s Disease Support Group Right for Me?

While support groups have multiple benefits, you can join whenever you feel ready. Listen and trust your gut, but also try and be open to the idea of sharing your experience and learning from others.

If you decide to join a support group, try to remain patient, as finding the right group can be a bit of a trial-and-error process. Keep in mind that you can always opt-out of the group at any time, or rejoin later when the time is right.

How Are Parkinson’s Disease Support Groups Structured?

Most Parkinson’s disease support groups are structured around a particular area of focus. They provide a comforting environment, either virtually or in-person, where members can connect, share their experiences, learn from each other, gather information, and receive emotional support.

The moderation of each group may vary, with some groups having more oversight than others. In many cases, the support group (especially in-person ones) are led by a volunteer group member but have guidance from a health care professional or social worker.

How Much Do Parkinson's Disease Support Groups Cost?

Most Parkinson’s disease support groups and their associated resources and services are free. Select exercise classes offered by support groups, like some associated with the ADPA, may cost a small fee.

By joining a support group within an organization, you may receive information about its various fundraising events, or ways in which you can make a monetary donation. These funds contribute to the running of the overall organization, which includes its support groups.

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Article Sources
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